This has been the hardest week yet for us. Terri and I aren't used to seeing Matthew this uncomfortable. By Sunday Matthew developed the most awful, hacking cough I've ever heard come out of a child. Usually one most enjoy a lifetime of cigarette smoking to develop this level of a wreching cough. Terri and I are thoroughly exhausted from the sleepless nights but my sympathies go to my son. He endures semi-hourly interruptions of his sleep for respiratory therapies, vital signs checks, diaper changes, rectal thermometer checks, and the administering of copious medicines. He is obviously responding negatively to the constant medical traffic in & out of his room because he is exhibiting an apprehensiveness towards personal contact that I've never seen before. Between the cough and diarrhea he is just miserable. Terri and I are hopeful that we might take Matthew home this evening where we can work towards rebuilding his innocent, trusting demeanor. He will likely go home on twice the amount of medications and breathing treatments. I am sorry there haven't been more postings on the Blog but I have been spending my nights at Matthew's bedside, then heading straight to work (sometimes without even showering or changing clothes). This will pass soon and our lives will return to a more normal pace. Thank you all for your thoughts and continued prayers.

Thursday, March 30, 2006

Tonight Terri told me that she was soooooo tired last night when she changed Matthew's diaper that she actually put the same dirty diaper back on the sweet little guy. After she had Magoo snuggly wrapped back in his blanket and he was all settled in and cozy, she went to look for the dirty diaper so she could dispose of it. Imagine the look on her face when she discovered what she had done. (Snoopy laugh!!!)

I am submitting this posting with Terri's permission. So, little Magoo, here's a funny little tidbit for you when you get a little older. By then, I'm sure all of our memories will have faded but, hopefully, this blog will continue to memorialize the funny stuff too.

Matthew has been very sick little boy since last Saturday. He was admitted to Sunrise Hospital with a 102.7 fever from the Emergency Room. This was suppose to be as a safety precaution because it had just been 9 days since his open-heart surgery. The Hospital Director chose to put this sick little baby on on the "lowest level" of hospital care. He was put in a private room in Pediatrics with a 7 to 1 nurse to patient ration. Mommy and daddy argued daily this was not adequate observation for Matthew due to his recent surgery and chronic lung problems. No body would listen to them even though Sunrise Hospital has a long history on Matthew King from being in the NICU for 2-months prior to his first open heart surgery and one month after.

The Medical Director never examined Matthew prior to sending him to a unit where observation is next to nil. I would like to point out that post-operative pneumonia was "suspected" on Saturday. This certainly was a likely culprit seeing as pneumonia is always a dreaded danger "after" any post operative procedure.

Hummm, high fever for days after admission, fuzzy chest x-rays, 9-days from open-heart surgery ,let's put this little guy on the "lowers level of medical care and observation ward.Cracker Jack boxes put out more intelligent diagnosis with all those symptoms. After being at Stanford's Lucile Packard Children's this was like throwing Matthew out with the bath water. These medical decisions did not go without the extreme protest of his greatest advocates, Michael and Terri. Both parent have provided Matthew with his medical care on a 24/7 basis. They as totally exhausted, not to mention sick themselves. This entire week has been a horrible nightmare for the King Trio.

Terri said that someone checked on our little Prince of Strength and Courage anywhere from once an hour to once every two hours. Believe me, nobody wore out any shoe leather going back and forth to this little guy's room that was far from the nurses station. If Matthew had been at home the parents would have been charged with "child neglect" and rightfully so. I am not going to rant and vent to you because I am sure you have already scatched your heads raw at this point. All I can tell you is that sweet, kind Mommy after only being home only 6 hours since Saturday, being sleep deprived and going through the most frightening night on Tuesday, finally blew up.

On Tuesday, two doctors came on duty with a "new set of eyes" and saw the immediate crises that Matthew was in and not getting well; but his condition had worsen. Matthew cough was painful and he relentless moaned and rocked his head back and forth. There was no consoling him because he was "that sick". Of course the "new visual" monitors at the front desk did not pick up the painful effects of pneumonia as there were no audio monitors or room visits. One doctor advised the new ward had nurses observing these monitors at all time and they could tell if the child was in distress. Of course this was NOT TRUE, because Michael and Terri had seen the oxygen, respitory and heartrates indicators with question marks signs, and no one ever bothered to even come check on this 10 month old child. Every time Auntie Kim, Michael or I ever went by the front desk, no body was ever watching the monitors. Maybe it was a monitor watching the monitors, do you think?

Once mommy called Dr. Mayman and vented her absolute frustration with Sunrise Hospital medical care did Matthew get moved to the floor the nurses said Matthew should have been on from the beginning. Terri and Michael do not blame the doctors or nurses as they have to follow their guidelines. When I asked if we could take our own baby monitors and set one up at the nurses station, I was told this was against regulations. I know God has been with the King Trio all along; because I had a good friend die within 24 hours after being diagnosed with pneumonia.

Finally, on day number #5 mommy and daddy got Sunrise Hospital to relocate their little boy sick with pneumonia and a non-mrsa staph infection in his urinary tract from the lowest level of health care to where he belonged from day #1, the intermediate post operative care unti on the 5th floor where all his previous nurses from the PICU welcomed our little hero so warmly and each perform a special little duty for him.

Mommy just called and said Matthew did not have a temp today so far. She actually went home last night and got some sleep. Daddy had been on a special case for his work for almost 24 hours that ended successfully. That gave him the adrenaline boost, so he stayed last night with his son who dearly missed him. Mommy said they have met with the Hospital Administrators throughout the day, so hopefully some other child will not fall through the cracks like Matthew did.

Please continue to pray for our sweet baby, Matthew. He did not suffer this much after his open-heart surgery, thanks to the wonderful, caring medical staff at Stanford. It's too bad you are so far away or Stanford would be the "only hospital" to lay eyes on our special little guy.

Monday, March 27, 2006

We just learned that the doctors traced the source of Matthew's fever to a Staph infection in his urinary tract. The probable cause was his catheter. Matthew has Kidney Reflux which means his urine backs into his kidneys from his bladder. That is worrisome because a kidney infection is dangerous. The good news is that they can target his infection with a specific antibiotic so we should get the fever under control soon. We don't know how long this might keep him in the hospital but the antibiotic can be administered through his G-tube so we could do it at home. Terri and I will be spending our third night sleeping on a small pull-out chair that gives new meaning to the name "love seat". It is a small price to pay to be close to Matthew's bedside while he is so sick. Thank you everyone for your continued support and prayers.

Sunday, March 26, 2006

Matthew spiked a fever of 101`F Saturday afternoon and we were advised to go to the Sunrise Hospital ER. Once there his fever was up over 102. He has been admitted to the hospital and we are upstairs on the fourth floor. They have done every test imaginable and believe he simply caught my cold. With Matthew, however, nothing is that simple. It is too risky to be home while he has a fever and chest congestion because it could turn into pnumonia and his lungs aren't able to handle that. We don't know how long he'll be in the hospital but we are spending the night with him because the nurses have other patients in addition to Matthew. He has a nasty cough and seems like he feels much the same as anyone with a cold, but overall he is OK.

Saturday, March 25, 2006

Because his sternum was cut down the center of his chest during surgery, we have to be extra careful not to lift or carry Matthew under his arms for several months. Thus, getting him in and out of his "Jump N Go" bouncy was a two parent job this morning. It was worth the extra effort because he enjoys it so much.

Friday, March 24, 2006

Auntie Gabrielle came over this morning and helped me give Matthew a bath. We were careful around his chest full of battle wounds. Prior to his bath I weighed him in at 16 pounds, 2 ounces (a loss of 6 ounces from his pre-surgery weight). This is a pretty negligible weight loss considering all he went through.

Matthew has outgrown his cute little wooden bassinet. Therefore we set up this portable play pen that moonlights as a bassinet. It has much more headroom inside and still enables Matthew to sleep in our room where we can tend to his overnight needs. This picture was taken right at bedtime. Matthew had a pretty tumultuous night without much sleep for any of us. He didn't have much of a urine output and seems to be getting a cold which made him very uncomfortable. He repeatedly coughed up some congestion which made his surgery-tender tummy hurt. I feel guilty for giving him my cold but there is just too much work involved in Matthew's care to leave it all up to Terri and stay clear of him.

This is Pam Bustamante. She is the lifeline between parents and doctors when their children are in surgery. She does a wonderful job of updating parents in the waiting room. I am amazed at how patient and positive she always is even when faced with stressed out parents on a daily basis.

We made it home to Las Vegas safe & sound. We put Matthew to bed around 10:30pm and were wiped out. It has been a long two weeks. Terri and I want to thank everyone for their thoughts and prayers. Once again God was with Matthew and we truly believe that your prayers for him made the difference. Bless you all.

Melanie is Dr. Hanley's Physicians Assistant. She does the best job of explaining heart defects and how they are repaired. Last summer I could barely pronounce or understand "Unifocalization" (the procedure Matthew had) before Terri and I met with her. She did such a good job of taking the "world of the unknown" out of the operation that we weren't even concerned when it came time for her to explain the risks. In addition to our "pre-op" interview, Melanie came by several times to look in on Matthew after his surgery.

Matthew got to take a red wagon ride to his Lung profusion test today. During the test they injected him with some low level radioactive fluid, then put him into an MRI type machine to track how his blood circulates through the lungs. The machine was over in the adult hospital so Matthew got a long wagon ride. You can see his little foot sticking up through the blankets.

Matthew wasn't too happy at first when they velcroed him into this blue nylon inhibitor. Unlike the CT scan where he had to be sedated to remain perfectly still, it wasn't so critical for the Lung Profusion.

Once inside the drum, these two sensor plates closed in on Matthew to within a few inches of his face. When he looked over at me for reassurance, I smiled and said, "It's alright Buddy-Boy". Then the expression I've seen a hundred times came over his face...Quiet acceptance of the way life can be.

To a child, this whole ordeal might seem like something out of a dark Tim Burton movie. I really expected Matthew to be hysterical while this machine rotated around him. Instead he just looked over at me on occasion while he rubbed his finger nails across the textured surface of the sensor. One of the technicians came over to me afterwards and remarked about how impressed he was with Matthew's disposition. I was so proud of my little Braveheart.

Grandma Sue came over this afternoon. She got to hold Matthew and feed him a bottle. At one point he had her convinced that he had destroyed his diaper but it was a false alarm. My mother and grandmother were patient playmates when I was little and it is wonderful to see her be the same way with my son.

Connie was one of Matthew's Respiratory Therapists last summer. She is always so happy and greets everyone with a smile. When she saw Matthew, she was so overwhelmed by how big he is now and how good he is doing that she started to cry. It is truly touching how much love and emotion the doctors, nurses, and RT's invest in their patients.

Tuesday, March 21, 2006

Matthew was wide awake at 7am this morning when we arrived at his room. He greeted Terri and I with a big smile and his kicking feet. It was a very busy day for him and, unfortunately, none of it was pleasurable. He had an X-ray, Echocardiogram, EKG, his pacer wires in his heart were removed, and they changed the dressing on the IV in his neck (IJ). By the end of the day he was noticeably agitated so these pictures are mostly from the morning.

Matthew has become fascinated with my coffee mug. When I walk into his room he gets an immediate radar lock and his head tracks it as I walk across the room. I love to watch him look at his circus mirror reflection from the metal so I wipe it down with a sani-wipe and hand it over until he gets his fill. Lucky for me it was empty when I took this picture. By the look on his face, I wasn't getting it back.

Dr. Gail Wright was there for us last summer during some of Matthew's hardest times. She had the dubious honor of breaking the bad news to us over and over as Matthew had continued setbacks. Dr. Wright would start with the facts and then talk about how children typically respond to the treatments being given. She never left the room without answering all of our questions and closing the conversation on a positive note. She and the rest of the CVICU staff put in long hours and are very dedicated. Not only did she give great care to Matthew at Stanford, but continued to follow up with us long after we had left.

Monday, March 20, 2006

Matthew had a busy day today. His chest tubes were removed, many of his CVICU buddies stopped in to say goodbye, he was moved upstairs and settled in, all the while suffering from the withdrawals of pain medication. Since he was on Morphine for such a short time he will likely be spared the Methodone regiment this time.

First thing this morning Katelyn and Dr. Amir removed Matthew's chest tubes. These tubes are the approximate diameter of my pinky finger and are used to drain blood and fluid from Matthew's chest cavity. It is a quick procedure done while the patient is fully awake. I must say I winced as each tube was drawn several inches out of Matthew's abdomen.

Matthew doesn't hold a grudge. A few minutes after Dr. Amir removed his chest tubes he was back to his jovial self and posed for this picture. I couldn't imagine having this good a disposition after going through that.

Dr. Gabriel Amir is one of the Cardiothurasic Surgeons who work with Dr. Hanley. He and his family are about to take a much deserved vacation across the country before returning to their homeland of Israel. The talk of the CVICU was how much he and Dr. Aziz will be missed.

Jerry is one of Matthew's Respiratory Therapists. He is, by far, the most creative contributor to our Blog. Jerry was always so good to us when we were wrestling with Matthew's lung issues. He has stayed in touch over the months while we've been at home. In that time he has written a song for Matthew called "Matthew's Eyes" and made a video of Matthew driving back to Stanford. Both can be enjoyed by Clicking Here.

Agnes was our nurse right after Matthew got a Staph infection last summer. She would always take extra time to clean all the surfaces in Matthew's room the moment she came on shift. Agnes also did a great job explaining the nature of Staph and helping us through our disappointment at the delays caused by the infection.

One boy's long road to recovery. Matthew was born two months premature with a rare fourfold heart defect known as Tetralogy of Fallot with Pulmonary Atresia and MAPCA's, and Ventricular Septal Defect. He's had two open heart surgeries and will need additional heart surgeries in the future.
To appreciate the absolute miracle of this "2 million dollar boy", you'd need to look into the "Archives" beginning after his first 9 hr open heart surgery at Stanford, August 2005.

First picture

2 weeks before he was born ~ we did not know of his defect until he was 4 days old

Day of birth ~ May 10th, 2005

4lbs 1oz ~ born at 32 weeks

Day of first surgery ~ July "05

"Unifocalization" ~ 9 hours by Dr. Frank Hanley

After first surgery

Chest was open for 4 days ~ hence the gauze on top

Chest was just closed

Still on a ventilator (remained on vent for another few weeks)

BiPap mask

Mask would assist him to breathe in and out

Getting ready for second surgery

Waiting for the surgery team to take him off

After second surgery

And still he smiles...

Leaving Stanford after second surgery

Happy day ~ Look no oxygen!

Happy Days

So much to be thankful for!

To view more pictures of Matthew while at Stanford, you can expand the year of 2005 by first clicking on the arrow, then the month. He was at Stanford from July thru September of 2005. Matthew was transferred back to Sunrise hospital where he stayed until the end of October 2005.His second open heart surgery at Stanford was March 16th of 2006.

We've been told he'll need a conduit change, on average, every three years. We are hoping technology will be on our side.He's our amazing little soldier boy. Our miracle.